¿Qué capacidades de comunicación tiene tu oncólogo?

This podcast episode is made possible in part by a grant from Lilly.

Welcome to The Breastcancer.org Podcast, the podcast that brings you the latest information on breast cancer research, treatments, side effects, and survivorship issues through expert interviews, as well as personal stories from people affected by breast cancer. Here’s your host, Breastcancer.org senior editor Jamie DePolo.

Jamie DePolo: Hello. I’m Jamie DePolo, senior editor at Breastcancer.org. I'm podcasting live from the 2024 American Society of Clinical Oncology Annual Meeting. I'm joined by Dr. Fumiko Chino, a radiation oncologist at Memorial Sloan Kettering Cancer Center.

At the conference she presented research she did with Breastcancer.org on how patients rated their oncologists’ communication skills, and if that affected how likely patients were to stick to their treatment plans. Dr. Chino, welcome to the podcast.

Dr. Fumiko Chino: Thank you so much for having me. We just wrapped up the annual meeting, and I'm just really excited by all the research that was presented here this week.

Jamie DePolo: Yeah. It was pretty mind-blowing. There was so much. So, why did you want to do this study?

Dr. Fumiko Chino: So, I was really excited to partner with the Breastcancer.org team to really evaluate key survivorship issues in breast cancer. What we know is that there’s some pretty large gaps in between what patients may expect their long-term outcomes to be and what is actually happening to them. 

So, it’s not even really even cancer-focused, it’s survivorship issues, it’s quality of life, it’s fatigue, it’s symptom management, and we really perceived a gap between the quality of care that should be delivered and what patients were actually reporting. 

So, we wanted to get a good idea of things that could influence survivorship issues, like communication with providers, and this study was really focused on how patients reported their providers were explaining things like symptom burden and side effects to them, and whether or not they felt…whether or not patients felt that that was actually sufficient for their knowledge, and then, of course, what may be the associated downstream impacts of poor communication may be, things like, for example, treatment adherence.

Jamie DePolo: Okay and could you tell us a little bit about the study or I guess the results? It was a survey I believe, and how many people participated and what did you find?

Dr. Fumiko Chino: Sure. We’re so grateful for all of the patients in the Breastcancer.org Community that participated in the survey. We actually collected almost 1,000 responses and we asked patients a real wide variety of how they were feeling, what their actual symptoms were, but then, also, specifically how they rated their provider’s communication. 

So, for example, did their provider communicate in a way that they felt they understood, and because I think… I'm a breast cancer provider, you know, I'm a radiation oncologist, and what I think might be clear communication from my perspective as a doctor, you know, the patient might later say, you know what? I didn’t actually understand anything that she was talking about. 

Radiation, you know, is a really complex topic, and I try to explain it in a way that I feel like is understandable, but I know that there are still gaps, and so, what we were trying to do with this study is really evaluate those gaps and then specifically look to see were there any populations that had maybe worse communication and then ultimately again, you know, how did that communication impact adherence?

Jamie DePolo: Okay, and what did you find? Were there specific groups that felt like they weren’t getting the best communication? Or, you know, age-wise, whatever?

Dr. Fumiko Chino: It’s interesting because prior research has actually suggested that populations that may actually have very large racial equity gaps, so, racial ethnic minorities, so Black patients, Hispanic patients, LatinX patients, they actually tend to rate their provider communication better. 

So, that’s really interesting because we know that there are huge, for example, even survival gaps in those patient populations and that there is actual elements of structural racism and provider bias that impact their treatments, but what we found that there was not actually significant differences in patient-reported provider communication, there was a little bit of a trend that minoritized groups may feel that their providers had less good communication, but it wasn’t a significant difference. 

Jamie DePolo: Okay, and then what about the treatment adherence? I'm assuming communication did play a role. What did you find?

Dr. Fumiko Chino: So, overall we found that about a quarter of patients, almost a quarter of patients were somehow non-adherent to the full course of treatment. So, that may be patients who specifically took less of a medication or less of a treatment. 

For example, cutting off chemotherapy early or stopping hormone therapy early and then there are patients who didn’t even receive any of that treatment, and so, there’s about, you know, less…slightly less than a quarter of patients that had some sort of non-adherence and we did find that patients who felt that their doctors were poor communicators were much more likely to have non-adherence, so that communication really did seem to matter is what my take-away from it is.

There’s some confounders here, because, for example, if you ended up having a high symptom burden, maybe you, just by the fact that you had a high symptom burden, you would’ve wanted more information about it, as opposed to if you had a low symptom burden, you probably didn’t care, you know, about the potential long-term effects because they didn’t happen to you. And so, there can be kind of a self-reinforcing cycle here, but my key takeaways were that communication really matters to patients and providers should be doing every single thing that they can to try to meet patients kind of where they stand and make sure that the information is really…really digestible and I think ideally reinforce that because we found that, for example, short-term side effects patients said they felt that were better explained to them than, for example, long-term side effects in that, you know, there was this element -- and I've seen this in my clinic -- where people felt, like, surprised by the long-term symptom burden whereas they felt a little bit more prepared to, for example, you know, lose their hair from chemotherapy.

Jamie DePolo: Sure.

Dr. Fumiko Chino: They didn’t quite realize how much those lasting impacts of, for example, peripheral neuropathy or fatigue could really affect their daily life even, you know, two to three years after cancer diagnosis.

Jamie DePolo: Okay. Okay, and then if you could put this in context for us. How can patients, or what can they do, if anything, to make sure they have the best communication with their doctor? Is it asking more questions? Is it, you know, emailing questions in ahead of time? Are there…are there steps that people can take?

Dr. Fumiko Chino: Absolutely. And I always try to encourage patients to specifically write all of their questions down and to make sure that they’re not missing anything because they certainly have interactions with patients where, and I do this myself actually as a patient, right, where like you’re in front of the doctor and all of the important questions just go flying out of your head and you can't remember what you wanted to ask them. 

So, I always encourage people to keep a question diary. And then, yes, if actually they can be written down or even sent in advance, that can be so helpful for me as a provider to make sure that I have the most relevant information that I'm giving them and that I'm actually answering all their questions. Because providers vastly overestimate their communication skills, will say. And we think we’ve answered all the questions and it turns out we skipped like the three in the middle. 

If I know someone has 20 questions as well, I'm actually going to allot more time for them in clinic, you know, or I'm going to try to answer some of the questions offline via the patient portal. I'm going to say you know what, these are the ones we should talk about in person, but here’s some kind of simple answers to these other questions, here’s some resources online that I trust and we’ll go from there.

Jamie DePolo: Okay. Is it helpful, do you think, for somebody to bring a person with them, a friend, a family member, that maybe that person can take notes for them and then the person can just listen? Because, you know, obviously, cancer, they’re upset, they may not be thinking clearly.

Dr. Fumiko Chino: I find that that auxiliary person, the friend, the loved one, the neighbor, the colleague, the husband, wife, the sister, is so helpful. I always call them their auxiliary brain, which is they’re the ones who are going to be trying to kind of keep up all the information, the poetry of it, you know, can be expressed one-to-one between the provider and the patient, but that caregiver role, the accounter role, the notetaker role is so essential, so important. 

I've certainly encouraged people even to, for example, phone a friend. So, even if they don’t have someone who’s available in person with them that they can actually have a friend on a phone in the consult or for example have someone even in a telehealth visit kind of remote in. And, hilariously, I actually…so, my best friend was just diagnosed with early stage breast cancer, and I was here at this annual meeting for her consult, and I actually phoned in to her consult as the auxiliary brain for her to make sure that she was having all of her questions answered and all of her concerns addressed. 

In terms of actual pointers for interactions for patients, though, talking to their providers, I think it’s helpful every single time you see a provider, to make sure that you’re kind of re-summarizing, you know, what the treatment plan and what the expected next steps are, including things like symptoms because at each phase of treatments and survivorship I feel like it can change slightly. And so, I think it’s just helpful to have kind of a summary, even if it’s just one line, so, you know, this is where I am, this is what I've completed, this is what I can expect. I think it’s so helpful, and you know, a survivorship care plan can certainly help someone with that in terms of expectations, but I think patient empowerment and patient engagement is one of the greatest new movements in cancer care, and I absolutely encourage it.

Jamie DePolo: That’s great and one last question. You know, you said people should sort of summarize back to their doctor where they are. Does it make sense to, it sounded like from the results that the long-term side effects were the ones that maybe people needed more info on, does it make sense to ask that specific question? Like I'm getting radiation now, I have some skin issues, are there issues a year from now that I can expect? Do you think that would be helpful?

Dr. Fumiko Chino: I think it would be helpful. I think sometimes it’s, you know, it’s hard for you to kind of keep everything in your head.

Jamie DePolo: Sure.

Dr. Fumiko Chino: And I suspect one of the reasons why we’re finding that short-term symptoms were better explained than long-term symptoms is that we only have so much time in a visit and we need to get you through the next step, which is, you know, active treatment. And I think the long-term symptoms are just kind of the last thing, you know? And also as a patient, and again, I know this, you know, from my own personal experience, it’s sometimes just hard to grasp that, you know. 

You’re like, I am just trying to survive this, you know? Like, what will come later will come later, and I understand that as well. Each patient is really individual in terms of how they think about things. Some people really want a preview to the movie. Other people just want to, you know, get through this one activity and then they can get to the next activity. 

So, the approach I think should be also customized to the person and kind of their unique communication concerns, their communication needs. Some people do best with written information. 

Some people do best, actually, getting most of their resources from the community, for example, the Breastcancer.org community, which I know is very supportive, very educational for patients no matter where they are on their kind of survivorship journey. But I think that each individual really does want something different sometimes, which is great. That’s part of, you know, making sure that we’re practicing truly patient-centered care, which would be customized information to make sure that you have the information that you need for today and for tomorrow.

Jamie DePolo: Yes. Thank you so much, Dr. Chino. This was great.

Dr. Fumiko Chino: It was a pleasure to be with you.

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